The Making of the
Voter Empowerment Project

NEW YORK CITYVOICES: September/October 1999

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By Ken Steele, Publisher
 

Almost five years ago, my whole world was turned inside out. Suddenly the alien voices, with whom I had lived since I was 15, stopped. Like magic, one minute they were busy babbling away; the next, they were gone. The voices had arrived in the same way 30 years earlier: suddenly over one night.

Now there is only silence where there had always been bodiless, faceless voices saying demeaning and terrible things. Relentless, commanding, and disorienting voices, I later learned were among the symptoms of schizophrenia: the disease I was diagnosed with at this early age. At the same time, they were familiar company for me. The voices were my only real companions for the past 30 years. Without them, I felt completely alone -- lost in a world among strangers whom the voices had repeatedly told me to always fear and never trust.

Confused at first, then terrified, I remember hurriedly turning up the volumes of my radio and television set, desperately trying to tune my voices back in. I recall rapidly changing channels and throwing remotes in the air in total despair.

These voices had started to speak to me at age 15 through my radio in my bedroom. They would often speak to me through televisions as well, especially when they used their more commanding tones with me. When they said I was not listening to them, following their instructions, or when they wanted me to harm myself.

To this day, I cannot sleep without the company of radio and television sounds in the background darkness of my bedroom. Still, I wonder if suddenly the voices, which had kept me company for 30 years will again speak to me. Suddenly and overnight.

Often I have wanted them to return. Being outside the disease which controlled my life for more than 30 years is not as simple as taking pills each day. Just ask my therapist, Dr. Rita Seiden of the Park Slope Center for Mental Health in Brooklyn, New York: "It has really been absolutely astounding what Ken has been able to accomplish and overcome," Dr. Seiden explains, "and with the help of Risperdal, which is one of the latest medications for schizophrenia, and with his psychotherapy, he has literally been able to reclaim his life. It just gives so much hope for other people with mental illnesses that they too may become productive citizens."

While a new medication, Risperdal, stopped the voices, I am personally responsible for keeping the voices out of my life. Language cannot describe the daily struggles I have had to endure to stay outside of my schizophrenia and to start a new life. My therapist has always been by my side whenever I called for help. She was my initial link between these two worlds, and she has proved an always steadfast, often fierce sentinel at the borderline separating them.

Ironically, at the same time my delusional voices stopped, outside schizophrenia new, riveting, real voices replaced them. In late 1994, these frightening, angry, selfish voices began to fill my consciousness. These were voices which wanted to abandon disadvantaged people, including the mentally ill -- including me.

Like my schizophrenic voices, the real voices mostly talked over radio and television, too. They demanded to cut community mental health services, treatment, housing and research. I listened to them as these voices talked of doing harm to many people like me by eliminating our meager SSI, SSD and Medicaid. Their message was commanding and clear. They wanted the mentally ill to either pull ourselves up by the bootstraps, or to be homeless, jailed or just somehow disappear. They simply did not want our care to cost them any money.

Frightened by these real world voices at first, I retreated, confused. They sounded very much like the delusional voices I had listened to for most of my life, but then I quickly realized they were all too real.

Similar to my schizophrenic voices, I decided I had to do something about these real voices. After all, if there was one thing I was accustomed to, it was voices which wanted to do harm. Voices which had told me I was worthless and I should go commit suicide and "decrease the surplus population," as a character in literature named Ebenezer Scrooge had remarked. These real voices seemed to me to be quoting Scrooge's infamous disregard for the disadvantaged -- but this was now and here and real and almost every day on television and radio.

I had enough of these voices. My therapist fully supported me. This time I would fight, even if it seemed like I would be turning back a tidal wave at the start. The fact that these were real voices made the fight and a victory possible, as did the ever-vigilant oversight and care of my therapist and psychiatric team.

So, I started to register one mentally ill person at a time to vote. Soon I found myself organizing a mental health voter registration and education movement responsible for registering thousands of new voters in time for the 1996 Presidential Election.

By mid-1998, the anniversary of my fourth year of complete freedom from my schizophrenic voices, well over 28,000 mental health consumers were successfully registered to vote. Most of them, for the very first time in their lives. Today, that number has swelled to over 35,000.

Almost five years later, I have a life where my opinions in articles like this one are not only read, but inspire others to give voice to their opinions and votes, too. I hope I am helping to create a unified effort to turn back the tidal wave of budget cuts aimed at the mentally ill and disadvantaged.

If the truth be known, I guess I have been too busy to let my illness overtake me again. I have traveled an Olympic marathon to leave it behind me; not running from it, but slaying its many dragons one at a time.

Outside my illness for the first time since I was 15, I've discovered the energy and high hopes of my interrupted adolescence once again. I've set course on developing a new, empowered life, empowering many other lives. And I like it. For the first time in a very long time, I'm beginning to like myself.

But I am still a schizophrenic, knowing something of what this disease looks like from both inside and out. I pray this knowledge will arm me to keep a careful watch to continue to stay outside of my schizophrenia, where I now know I can live a successful, joyful life with effective medication, supportive therapy and in the company of real people with meaningful, caring relationships.

For the previous 30 years, I had never imagined this was remotely possible.
 


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